Help, I am new

1

I tried this before and guess it did not go through. So I will shorten this time. We have 2 homes, one in Clearwater, FL and one in Zeeland, Mi, (we are in Mi now). Just recently diagnosed. Is anyone from either of these areas?

Is the pain awful all the time,or does it go away sometimes. I am on carbamazepine and Doc here says I can take more if needed.

Also, thanks to those of you who wrote me right away. I am new to this sort of thing and don't know how to put in pic. I am 64year old female who was pretty happy and outgoing until this started a few weeks ago.

Thanks

2

HELLO AM 46 AM FROM TEXAS CLOSE TO THE OCEAN AM SORRY YOU HAVE PAIN , I HAD IT FOR 5YRS CLOSE TO 6 YRS BUT I STILL HAVE IT !!!!!!

MY PAIN COMES AND GO NO SURGERY ,JUST EPITOL 200MG TWICE DAILY I DONT HAVE MONEY FOR THAT!!

SO I HAVE TO TAKE IT EASY AM HAPPY LONGS I HAVE NO PAIN GOD BLESS!!

3

Hello,

first of all SALLY<go to walmart epitol 200mg is on there $4 list! just tell them you don't have insurance, i'm on it too>

hey,

i'm in Chattanooga, TN not to far :/ i have had TN for 2 1/2 yrs now. yes there are times of remission and times of pure hell (sorry but its true) You learn the triggers and the tricks to help. but do your research and ask lots of questions especially on here! this site is great. but you can't depend on your doctors to know anything. this condition is very rare. for me fall and spring time are the worst! times of remission i have no problems at all. bad times my triggers are wind, touching my face or hair and really bad talking well pretty much anything! you used the word "WE" so i'll come out and say this! keep communication open during the bad times because this will really hurt your relationship if you don't. its hard to be close to someone when your afraid of hurting or causing them severe pain that sends them to the emergency room. but enjoy every moment of the good days!

one MAJOR thing is get a note from your doctor/neurologist saying you have TN and what your on for it~ unfortunately this condition causes many ER trips because of pain, they tend to start to think your just looking for pain drugs.

any questions again don't hessate to ask =D

melissa

4



Melissa A. Williams said:

Hello,

first of all SALLY<go to walmart epitol 200mg is on there $4 list! just tell them you don't have insurance, i'm on it too>

hey,

i'm in Chattanooga, TN not to far :/ i have had TN for 2 1/2 yrs now. yes there are times of remission and times of pure hell (sorry but its true) You learn the triggers and the tricks to help. but do your research and ask lots of questions especially on here! this site is great. but you can't depend on your doctors to know anything. this condition is very rare. for me fall and spring time are the worst! times of remission i have no problems at all. bad times my triggers are wind, touching my face or hair and really bad talking well pretty much anything! you used the word "WE" so i'll come out and say this! keep communication open during the bad times because this will really hurt your relationship if you don't. its hard to be close to someone when your afraid of hurting or causing them severe pain that sends them to the emergency room. but enjoy every moment of the good days!

one MAJOR thing is get a note from your doctor/neurologist saying you have TN and what your on for it~ unfortunately this condition causes many ER trips because of pain, they tend to start to think your just looking for pain drugs.

any questions again don't hessate to ask =D

melissa

5



rovidesis2 said:



Melissa A. Williams said:

Hello,

first of all SALLY<go to walmart epitol 200mg is on there $4 list! just tell them you don't have insurance, i'm on it too>

hey,

i'm in Chattanooga, TN not to far :/ i have had TN for 2 1/2 yrs now. yes there are times of remission and times of pure hell (sorry but its true) You learn the triggers and the tricks to help. but do your research and ask lots of questions especially on here! this site is great. but you can't depend on your doctors to know anything. this condition is very rare. for me fall and spring time are the worst! times of remission i have no problems at all. bad times my triggers are wind, touching my face or hair and really bad talking well pretty much anything! you used the word "WE" so i'll come out and say this! keep communication open during the bad times because this will really hurt your relationship if you don't. its hard to be close to someone when your afraid of hurting or causing them severe pain that sends them to the emergency room. but enjoy every moment of the good days!

one MAJOR thing is get a note from your doctor/neurologist saying you have TN and what your on for it~ unfortunately this condition causes many ER trips because of pain, they tend to start to think your just looking for pain drugs.

any questions again don't hessate to ask =D

melissa

Hi Melissa,

Thanks so much for writing. What is epitol? Is it for pain or to calm the nerves. I am taking 600 mg of carbamazepine (tegratol) daily now. I know before I got itn, we have had lots of wind here and rainy wind. Don't know if that started it. People think I am crazy walking with a scarf in 80 degree weather, but the stores are so cold. Doc pretty much is letting me tmeds how I want. I started with 200. Seems to last about 6hrs. I have pain all the time, but this takes off the edge. I know no one knows much. I read only 200,000 people have it.

I am married and it is very hard for my husband when I cry. Not sure how much is from disease or meds. I know this is a very bad thing to have. And I keep asking myself, is this how the rest of my life is going to be. I read some people take fish pills, so I am taking those also. We ran out. I am also going to look up cherry pills or juice. I have a friend with rheumatoid and her blood tests have improved after taking cherry juice. Again, we used to take cherry pills, but quit, trying to not have to take so many things. They both work for inflammation.

thank you again, My name is Crystal. Glad to know this may not be a 24/7 thing.

6



sally choate said:

HELLO AM 46 AM FROM TEXAS CLOSE TO THE OCEAN AM SORRY YOU HAVE PAIN , I HAD IT FOR 5YRS CLOSE TO 6 YRS BUT I STILL HAVE IT !!!!!!

MY PAIN COMES AND GO NO SURGERY ,JUST EPITOL 200MG TWICE DAILY I DONT HAVE MONEY FOR THAT!!

SO I HAVE TO TAKE IT EASY AM HAPPY LONGS I HAVE NO PAIN GOD BLESS!!

Thank you Sally, I see epitol is a form of tegratol? Keep in touch and let me know if anything else helps you. I guess we desperate people will try almost anything. I don't surgery works all the time. thank you again - Crystal

7

yes epitol is a generic form of carbamzabine. I think it is great that your seeking out natural alternatives, just fair warning make sure your doctor and maybe even your pharmacist knows what your taking. there are alot that can be counteracting of your medicine, so just be careful. i also do them thats why i say this.

8

I was on Tegretol and Klonopin (clonazepam) - both brand name. I am only on Klonopin on a as needed basis. The Tegretol broke me out in rashes after it reached a certain level in my system. I’m 34 and from TX.